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Struggling with making an osteoporosis treatment decision

Posted by heyhey @heyhey, Dec 15, 2020

I am just struggling to make a decision about my treatment. I had my first bone density test and found I have osteoporosis. I have a couple of -3.2 vertebrae. My hip bones less problematic. I'm 60, active and fit. I've seen an endocrinologist and a rheumatologist who were both highly recommended. Both said "Evenity" before I barely sat down. But there is so little known about Evenity, and nothing known about its long term effectiveness or risk. I've read heart breaking posts from women who were advised to take Prolia with the same assurance and then had multiple debilitating fractures because so little was known/admitted about rebound risk. I am tearful and anxious and sleepless. I've been so healthy my body has carried me through so much life and adventure. I just don't know what to do , whether I'm putting me/my body at risk. Both doctors are paid consultants for Amgen. I feel hopeless and distressed. One of the doctors, although I said I wanted to consider my options, went ahead and got pre authorization for Evenity from my insurance "to show me how easy it would be". I feel cornered. My general doctor also has concerns about me being put on a relatively unknown drug when I haven't tried something like Forteo with a long track record.

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Profile picture for kfhoz
kfhoz | @kfhoz | Aug 26 10:59am
In reply to @momcatvw "@proliamistake I’ve taken all the different meds for osteoporosis over the years, with either no or..." + (show)
Profile picture for momcatvw @momcatvw

@proliamistake
I’ve taken all the different meds for osteoporosis
over the years, with either no or negligible result. Some with bad side effects.
However I did get the Evenity shots for a year with no problems but again, with barely any gain.
2 drs’ strongly encouraged the Reclast infusion but after researching, I won’t take a chance with those side effects.
It’s very frustrating & difficult.
I compromised when endocrinologist called me personally & agreed to start Alendronate again but declined Reclast infusion . Reclast infusion is for a year & I was afraid of side effects long & short term.
It had been a few years since I took the Alendronate, it’s a weekly pill & had no side effects.
I continue to do squats & use hand weights on vibration plate, walk 10,000 steps daily & do core strengthening exercise & stretches. I also have back & hip pain. I don’t know if I’ll take anything for osteoporosis when this year is up.
Sometimes it’s better to take the devil you know.

I wish you the very best. I know how difficult it is to know what to do for osteoporosis & avoid the bad side effects.
.

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@momcatvw I saw a Dr. Doug Lucas video in which my recollection is that he said: "Some people find it easy to regrow bone. Others do everything right and it still does not happen for them."

That is not an exact quote as I did not save the link to that video. It just struck me when I heard it. Sounds like you may be in the "doing everything right" without it happening camp. Keep up the great work, it may be what is keeping you from losing more bone density ground.

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sb52 | @sb52 | Aug 26 9:26pm
In reply to @gravity3 "@consumer Evenity is an anabolic Osteoporosis medication. I took evenity for a year. No noticeable side..." + (show)
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@consumer

Evenity is an anabolic Osteoporosis medication. I took evenity for a year. No noticeable side effects and great gains.

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@gravity3 What did you do for followup?

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1 reply
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sb52 | @sb52 | Aug 26 9:28pm

The problem isnt the Evenity so much as having to follow it up with something like Reclast.

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gravity3 | @gravity3 | Aug 27 1:51am
In reply to @sb52 "@gravity3 What did you do for followup?" + (show)
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@gravity3 What did you do for followup?

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@sb52

Prolia. So far no noticeable side effects.
I may decide to take a reclast infusion next time rather than Prolia and hope that I may be able to take a drug holiday. I am 78 so I may continue with Prolia.

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petitefitsmartfemale | @petitefitsmartfemale | Aug 27 9:27am
In reply to @momcatvw "@proliamistake I’ve taken all the different meds for osteoporosis over the years, with either no or..." + (show)
Profile picture for momcatvw @momcatvw

@proliamistake
I’ve taken all the different meds for osteoporosis
over the years, with either no or negligible result. Some with bad side effects.
However I did get the Evenity shots for a year with no problems but again, with barely any gain.
2 drs’ strongly encouraged the Reclast infusion but after researching, I won’t take a chance with those side effects.
It’s very frustrating & difficult.
I compromised when endocrinologist called me personally & agreed to start Alendronate again but declined Reclast infusion . Reclast infusion is for a year & I was afraid of side effects long & short term.
It had been a few years since I took the Alendronate, it’s a weekly pill & had no side effects.
I continue to do squats & use hand weights on vibration plate, walk 10,000 steps daily & do core strengthening exercise & stretches. I also have back & hip pain. I don’t know if I’ll take anything for osteoporosis when this year is up.
Sometimes it’s better to take the devil you know.

I wish you the very best. I know how difficult it is to know what to do for osteoporosis & avoid the bad side effects.
.

Jump to this post

@momcatvw , I am so sorry. Thank you for sharing.

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erinz | @erinz | Aug 28 3:57pm

My doctor has prescribed generic Forteo which is teraparatide. I haven't yet taken it because I'm worried about side effects, one of which is hypercalcemia. My doctor didn't say anything about getting my calcium or my heart checked before I start the medication. I would like to know if this has happened to anyone else who has been prescribed teraparatide, if your doctor told you to have a heart check-up before starting the medication. Thanks!

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1 reply
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njx58 | @njx58 | Aug 28 5:43pm
In reply to @erinz "My doctor has prescribed generic Forteo which is teraparatide. I haven't yet taken it because I'm..." + (show)
Profile picture for erinz @erinz

My doctor has prescribed generic Forteo which is teraparatide. I haven't yet taken it because I'm worried about side effects, one of which is hypercalcemia. My doctor didn't say anything about getting my calcium or my heart checked before I start the medication. I would like to know if this has happened to anyone else who has been prescribed teraparatide, if your doctor told you to have a heart check-up before starting the medication. Thanks!

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@erinz The way to go is to try it, and the doctor has you do the blood tests at three months, six months, and so on. Don't assume that a side effect will happen to you.

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